Inspiring stories of person- and family-centred care during a global pandemic.

Reta, 95, lives in a retirement home across the street from Newmarket’s Southlake Regional Health Centre. Judy Smith, her daughter-in-law, is not her substitute decision-maker, but the person Reta wants all health decisions to go through. Smith has seen first-hand the impact and value of person- and family-centred care on Reta’s quality of life. In fact, that focused care allowed Reta to achieve her goal last fall to independently walk over the threshold of Smith’s home for her 95th birthday party. A few months prior to that milestone event, the goal seemed out of reach, since Reta had fallen at home and broken both of her ankles.

Fortunately, the soon-to-be centurion and her daughter-in-law were introduced to the Southlake at Home Program, which identifies elders who would not do well in hospital for a prolonged stay, and with intense case management in the home, are discharged to their own environments.

Smith, who has since become a Southlake patient and family advisor, says the program was a game-changer for the family. The care “…was co-ordinated…it was goal focused,” she says. And “…because of the co-ordination, because of the trust, and the soft transitions along the way, Reta met her goal.”

Smith says the program’s co-ordinators made a point of understanding Reta as a person before establishing her care plan. Since Reta is hearing impaired, a lot of people will not talk directly to her, but rather to the people around her. The co-ordinators worked really hard to talk directly with Reta, Smith says. And when they got a sense of her needs and goals, they reached out to Smith to understand even more.

When Reta was discharged from hospital and arrived back at her retirement home, the nurse responsible for her care arrived less than two hours later to get a better sense of her home environment, talk with Reta, talk with the family, and develop a plan that was organized around a 9:30 a.m. hair appointment Reta was anxious to get to the next morning.

This first-person account of the impact of person- and family-centred care (PFCC) inspired the team at Southlake, and led the organization to enlist Smith to share her story with other health professionals who are working towards the same quality of life outcomes from enhanced PFCC. These colleagues gathered on Sept.10 to share their stories of inspiration as part of the Best Practice Spotlight Organization (BPSO) Ontario Health Team (OHT) movement.

In the fall of 2019, RNAO launched the BPSO OHT initiative, joining forces with four of the province’s new OHTs that have committed to building the expertise and developing the partnerships necessary to implement RNAO’s Person- and Family-Centred Care best practice guideline (BPG), one of several BPGs they are required to implement as part of the BPSO OHT partnership.

Smith’s story was one of many examples of PFCC that were shared at the Sept. 10 meet-and-greet that brought together leads and champions from North Western Toronto (NWT), East Toronto Health Partners (ETHP), Southlake Community Health and Ottawa East Health Team. Each BPSO OHT consists of a core group of champions who have participated in training sessions with RNAO coaches, and have subsequently met virtually to network and share strategies among their partner organizations for better PFCC approaches. RNAO meets regularly with the groups to facilitate knowledge exchange and hear about their exciting work.

COVID-19 restrictions and protocols have changed PFCC. In community care, vital programs and services that patients rely on day-to-day have been re-envisioned in a virtual way to ward off the devastating impact a cancellation of the program could have on individual health.

Since completing the champions training in December 2019, Runnymede Health Centre, a partner in the NWT BPSO OHT, has ramped up a program that connects patients and families via tablets. In addition to virtual one-on-one visits, patients have been able to virtually visit places like the Art Gallery of Ontario (AGO), the Royal Ontario Museum (ROM), the Bata Shoe Museum and the National Gallery of Canada.

RN Andrea de Jong, manager of interprofessional practice, programs, education and research for Runnymede, is also the organization’s BPSO OHT lead. She says the COVID-19 pandemic has shown just how important it is to create virtual connections. The pandemic has meant “…visitor restrictions and modified therapy and social activities on the units. People are coming in wearing masks, making familiar faces difficult for patients to recognize. In that way, we really do have to think about person- and family-centred care and how we can still work with patients and families to make this a positive experience and give them that connection they need. We have to provide care that is meaningful to them,” de Jong says. Video calls “…help decrease anxieties associated with separation and isolation…and bring some comfort to them by seeing their loved one, talking to them. We really felt it was crucial to make those connections happen, and happen frequently.”

Since earlier this year, Runnymede has doubled its supply of tablets, offering more than 50 patient and family video calls each day, and upwards of 2,000 a month. “We talk every day,” says Rosina, a patient who connects with her three daughters via video. “It’s a good idea.”

For Natalie, whose mother is a patient and is verbally unresponsive, learning how to communicate with her without touch and without being in the room was “…a little bit of a challenge at first, but we’ve had a lot of time to practice and we’ve navigated it. I’ve learned how to tailor my questions…so she can give me a “yes” or “no” answers. We do things that are fun on the call. We have dance parties and I play music…songs that she loved when we were growing up. We tell stories. Jogging her memory of better times is how I focus on it. I let her in on what I’m doing that day. Sometimes I give her a tour of my house or my studio. We’ve had to get pretty creative, but it’s been a great opportunity to just check in and see her.”

Creativity has been vital as health organizations adapt to enhanced COVID-19 protocols and processes that are meant to keep patients and clients safe, but have negative consequences in some cases. Toronto’s Michael Garron Hospital, a partner with the ETHP BPSO OHT, has also developed some innovative programs for PFCC in a pandemic world.

Speech language pathologist (SLP) Leah Silber is a BPSO OHT champion (the initiative involves providers of all specialties, including RNs, NPs, physicians, social workers, SLPs, PSWs, occupational health specialists, and more). She participates in Michael Garron’s PPE Portrait Project, which allows her a unique opportunity to connect emotionally with patients. PPE (personal protective equipment) is vital to deliver safe health care, but the layers of protection can distort speech sounds and hide facial expressions that are also vital to patient-centred care. Establishing trust and fostering a relationship with patients is difficult with PPE. So, to address the challenges, care providers have started wearing badges with a photograph of their smiling face, affixed to their outer protective gear. “We rely so heavily on a simple smile,” Silber says in a story about the program in the organization’s newsletter. The portrait project “…allows patients to connect with us as individuals.”

In addition to the badges, care providers are also learning about how to use non-verbal communication to establish a positive patient rapport. The project is a pilot, with 15 SLPs and occupational therapists wearing the badges during the initial phase of the project. When the pilot is complete, the goal is to have all patient-facing staff wearing the badges.

Establishing trust and an emotional connection with patients is crucial in all sectors of the health system, and is particularly important in the mental health sector. Mik Phipps is an outreach manager for persons experiencing homeless. He works at the Canadian Mental Health Association, a partner with the Ottawa BPSO OHT. At the September meet-and-greet, he shared a compelling story of connection and PFCC on the frontlines.

He was approached by a client to help address some unpleasant side effects of his medication. Phipps immediately started outlining his plan to look at the dosage, book an appointment at the clinic and start the process rolling to adjust the prescription. “He (the client) told me: ‘No thanks. Let’s go to church,’” Phipps recounts. “That stopped me in my tracks,” he admits. “I had my own biased opinions of this person’s understanding of the health-care system, and I found the plan unusual. But luckily, we use a strength-based approach and I have a lot of flexibility and spontaneity in my role. I got to say: ‘Yes. Let’s go and try it out.’”

“When we arrived, I found a church filled with people. Everybody seemed to know each other. A volunteer community worker met with the person I was accompanying…and had a direct line to his prescriber, was able to place a call on the spot, do a consultation on the spot, adjust the medication dosage, and arrange for it to be delivered at the shelter where this person was staying. That all happened in front of my eyes,” Phipps says. “On top of this, they were serving a community meal, so we sat down and had lunch and the person I was with said grace in English and Inuktitut, and I got to participate in that community event.”

BPSO OHT champions across the province are finding inspiration in PFCC moments such as these. And that inspiration is feeding the growing momentum to create innovative approaches to care that put the patient and family at the centre of any and all efforts. The stories explored here reflect only the tip of an iceberg across Ontario’s acute, community and long-term care sectors. Champions have been working exceptionally hard through the COVID-19 pandemic, to build a movement for better PFCC, regardless of the challenges they might face. And their efforts have not gone unnoticed.

“I’ve been watching this program grow since the start,” says Susan McNeill, RNAO’s senior manager, implementation science, and lead coach for the initiative. “Like never before, different types of health providers from organization across the full spectrum of care are working together towards a common goal. They are supporting one another, sharing creative ideas and reinforcing the value of person- and family-centred care. Their passion and dedication is contagious.”

“These are amazing stories,” RNAO CEO Doris Grinspun, founder of the BPSO OHT movement, told participants at the September meeting. “It sounds almost too perfect, I must say, given what has evolved during COVID-19. This is a hard time, and yet you guys have pulled together. The work that the BPSO OHTs are doing is truly inspiring and impactful.”

Kimberley Kearsey is managing editor for RNAO.